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Polymyalgia Rheumatica and GCA

Also known as GCA - Giant Cell Arteritis, Temporal Arteritis

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  • Pinned

    Reducing pred: dead slow and nearly stop method

    Copied from Eileen's post in another discussion. A group of us worked out reduction schemes individually that have allowed us to reduce far further than ever before but they are all basically the same - and they were based on a scheme a Swedish gentleman worked out when he simply couldn't get...

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    PMR-GCA website addresses and resources

    If anyone has any further suggestions for inclusion do not reply to this but please contact me separately. PMR-GCA NE can be found at www.pmr-gca-northeast.org.uk PMRGCA-NW SUPPORT GROUP http://www.pmrgcasupport.co.uk/ The forums within the NE site are here - http://pmrandgca.myfunforum.org/index.php...

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  • I'm having a day of confusion and that unwell feeling

    In the last 3.5 years I've been on Prednisone for PMR, been diagnosed with cilliac disease, (blood work was very high with positive results), fibromyalgia, tried Lyrica but couldn't tolerate it) had two hips replaced and Dr says they are not healing because of the Prednisone.. still using a walker.....

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  • PMR same ole same ole

    same ole question re tapering and hurting and when to go back up on pred.  I was at 4 1/2 in June but couldn't handle the bone crushing fatigue so at the advice of you all, I went back up to 5 a couple weeks ago, and have been a little better.  Yesterday evidently was a killer for me:  walked...

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  • Prednisone and osteoporosis

    Hi everyone, I’m recovering from a 3 point pelvic stress partly brought on by my own denial and driveness. I had stable osteopenia for at least 10 years which I kept at bay with weight  bearing exercise, diet  and Cal-Mag, D3, and Omega Fatty Acids. I was dx with PMR almost 3 years ago, had...

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  • Husband diagnosed with Polymyalgia Rheumatic

    Him all, about a month ago my husband started having sever pains in his groin area.  He saw them doctor and was sent for physical therapy. She did help him some but he said that the pain kept moving around the most sever still in the groin area. The muscles just seemed to be knotted up. The pain...

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  • Morning Ramblings

    It's 5 in the morning.  Things have been going pretty well all things considered.  I've learned to scale back my work to match the Pred dose and that's made a big difference.  Taking the 2nd 1/2 of my spit dose about 11 pm was a great help as well.  One sure has to pay...

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  • Bouts of tiredness and having difficulty getting going

    I am now on 2mgs of Pred but am so tired.....no pain. The fatigue comes and goes in waves. Is this an adrenal problem or just part of the adjustment when the Pred is so low? I have been able to do so much more recently but now seem to be hitting a low. I don't normally put salt on food but have been...

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  • A great year

    Last year after suffering a very bad flare I was depressed and sedentary. EileenH and others motivated me to get moving. I did 1/6 of a mile then 1/3, 2/3 finally a mile. It was very slow progress, as I hobbled along with my cane, I worked at it. I was ready for skiing. I didn't ride my bicycle was...

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  • Starting Acterma and nervous

    Hi everyone I seldom post but read your discussions often. I live in the US and have been approved to take Acterma injections. I have GCA and PMR diagnosed last July. I haven't been able to taper very much off steroids. I would love your feedback about the medication and especially if you are taking...

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  • 7 months with PMR and...

    Got a diagnosis 7 months ago and have had a fairly easy time getting to 6-7 mg prednisone.  This week I kayaked for 10 minutes and the next day my left shoulder and bicep have been the worst it has ever been.  It did not hurt to paddle at all.  I used the prednisone to 10 with out ant...

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  • Methotrexate together with Pred. 😩

    Today I was at my Rheumatologist and have come away completely confused.  My CRP has now lowered and I'm quite back to normal in that case.  I'm still on 21gm Prednisone and trying very hard to get down taking the easy slow method.  My rheumatologist seems to think that I don't...

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  • Baking Soda for PMR

    I am wondering if anyone has taken baking soda (bicarbonate of soda) while taking prednisone. I am willing to try this if it won't kill me. I have osteoporosis and don't want to take a medication for that. I am doing everything I can to build my bones, calcium, D3, K2, dark greens and walking....

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  • PMR and RA treatment question

    I have PMR since November 2015 and was slowly reducing and got to 3mg, when I started having problems with knuckle joints, pain, weakness and swelling.  About 3 weeks ago I saw Rheumi and he suggested not to reduce pred any more and also gave me some ointment for inflammation/pain. It helped a little,...

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  • Reducing Pred - Blood Glucose Levels

    There must be something on this in the forum - but I can't find any ATM. As the Pred dosage is reduced would one expect Blood Glucos leels to do so also or does this vary? We've no idea what hubby's levels wee prior to diagnosis as it was about 30 or more years since he'd seen a GP previously....

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  • MTSS

    Hello,  Long story unfortunately so please bear with,ive been dealing with serve leg pain since September 2017, hurts walking & exercising and when at rest, I got referred to a Physio who noted some tenderness in my back so was referred for a MRI on my back which showed a bulge in L5, S1 so...

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  • split dose

    good morning and hope you are all well i have had my three monthly check at chapel allerton. because my hands and feet and neck are so inflamed the specialist asked me to go from 6mg to 10mg as i am having problems decreasing. as i took my usual 6mg that morning when i went home i took another fourmg...

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  • Prednisolone plus ibuprofen

    I’m on 6mg prednisone after reducing from 25 mg some months ago. Last night I took 1 ibuprofen tablet for head ache and I am almost pain free today. Why can’t I take ibuprofen daily. 

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  • Steroid induced diabetes

    Has anyone got this??? I am pretty sure I have!!!  My HBA1C count, or three monthly blood sugars, indicate a drop from 49 to 46, or 0.3 on the older measurements, despite losing two stone+ in the same period....or am I jumping to conclusions??  I am certain that without the steroids, currently...

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  • Turmeric and Pred

    A couple of years ago I had an TIA and was prescribed statins.  After a short while I started getting leg pains so I stopped taking them. I have been taking turmeric for a while as it is supposed to reduce cholesterol.  My last blood test showed an improvement but the doctor wasn't convinced...

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  • Pmr relapse with normal crp and esr

    Started at 40mg Prednisone about a year ago for PMR.  Had classic pains and elevated crp and esr.  Got down, over a year of tapering to 2.0 mg pred. Experienced my first flair (pain) last week and went to doctor.  Crp and esr are normal, but I am experiencing all the physical symptoms...

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  • newly diagnosed

    I’ve been suffering with severe pains in both my legs, top to bottom, & also my buttocks, for a couple of months..worse in the morning then gradually reduces. Around the same time I’ve had daily shooting pains in my head & quite often a dull ache behind my left eye. On my  3rd visit to my...

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  • Burning Sensation in Legs

    Hi All, I haven't asked any questions for a while, because everything seemed ok. I'm down to 2mg of prednisolone, I still have to pace myself on daily chores or otherwise I'll 'crash and burn'. I've lost 18 pounds of steroid weight since May due to diet and exercise which I'm...

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  • Treating Pain Using the Brain

    Yesterday I watched this presentation by David Butler on YouTube.  It was quite long,nearly an hour but it was very interesting and I found it quite inspiring.  David Butler is an Australian pain specialist and the presentation was for the Australian arthritis society. If you are interested...

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  • The million dollar question - how long does PMR last?

    Hi all! You know how we are so often assured that PMR burns itself out in a couple of years? After reading Pandemonium's post I went off to do my usual searching the Internet for medical studies and found the one that is probably the answer to why we are told this despite the number of us who know,...

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  • Waiting And Miserable

    Hi Everyone.  I am waiting for my follow-up appointment with a rheumatologist on Thursday.  She thinks I have PMR but wanted to rule out a couple of other things.  They did bloodwork and I went and had x-rays. My story is that last September I had a total abdominal hysterectomy. ...

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  • At last rheumatologist appointment

    I went at last to see rheumatologist after a year of waiting she tells me I don't have pmr but severe osteoarthritis. I feel really let down as I have been taking steroids for that year unnecessary she says it will take a long time at a reduction of 1mg every 3 months . I had more blood tests plus...

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  • I'm down to 6 mg... Finally

    I just wanted to get on here and brag a little about myself. This past Monday I started 6 mg of prednisone and it's working. I don't think this is from spending the last year-and-a-half unable to get below 11 mg. So since February I have tapered from 11 mg to 6 mg. I have been dropping a whole...

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  • Anyone tried LDN for PMR?

    I've recently stumbled across some information on something called LDN (low dose naltrexone) which seems to be positive for the treatment of a whole host of autoimmune conditions, PMR possibly being one of them.  Naltrexone apparently is a medication used in opioid and alcohol addiction treatment...

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  • Pred & vaccinations

    My surgery has offered me a shingles vaccination but when I checked it looked as if both live and dead vaccines don’t mix with Pred. Anyone had experience of this while taking Pred? Seeing my GP next week abd I like to be forewarned! He’s lovely but doesn’t know everything! 

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  • To taper or not to taper... that is the question

    I went for usual 3 month checkup with rheumi and all tests are fine, there is no measurable inflammation ( withing limits). I dont have much of the usual PMR symptoms except the morning stiffness, which goes away after the walk. IThe only problem I have is that my hands are weak and hurting to the point...

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  • Is there such a thing as Prednisone withdrawal?

    Diagnosed with PMR and started taking Prednisone in April of 2017. Started at 15 mg and decreased gradually and stopped taking it June 27. On July 6, I started having diarrhea, stomach cramps, chills, nausea and complete loss of appetite. Talked to a triage nurse today who says it sounds like a viral...

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